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Rolling sea to sea

By Maureen Mullen
Globe Correspondent / February 4, 2010

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On the verge of being evicted from his home in 2008, Matt Eddy hit the road, leaving his native Lynn for California.

But Eddy was not running from bill collectors. He was traveling to raise awareness - and money - for people in situations similar to his. Severely disabled with Duchenne muscular dystrophy, Eddy traveled more than 3,000 miles over 119 days in his motorized wheelchair from Boston to the Golden State.

Eddy, who turns 33 on Valentine’s Day, was diagnosed with DMD at age 4 and has been in a wheelchair since he was 10. He can move two fingers on each hand, which he uses to operate his wheelchair. A ventilator controls his breathing.

“He’s beating the odds,’’ said Ron Steenbruggen, Eddy’s respiratory therapist, friend, and traveling companion. “Matt says he is one of the ones who will be cured of it. And he doesn’t even care if he’s cured. He just wants his arms back.’’

This summer Eddy and Steenbruggen plan to make the cross-country trek again, leaving on June 5 from Red Rock Park, which overlooks the Atlantic Ocean in Lynn. This time they have a more specific goal.

Calling it their “Journey of a Million Smiles,’’ they hope to raise $1 million, or $1 each from a million people, to benefit Matt’s Place, a charity that Eddy founded in 2000. Its mission is to improve the lives of individuals living with disabilities by helping to build accessible housing and educating the community on disability-related issues.

“The ultimate goal is to keep the charity going,’’ said Eddy, who is living in Lynn again. “Make money for our next project, to build some’’ homes for disabled people.

From his wheelchair, Eddy has seen the worst and best of people - from the woman at a local restaurant who complained to the manager that she shouldn’t have to look at Eddy while she ate, to the Native American woman in the Southwest who, after meeting him, went home and returned with food and an American flag blanket that he would need when nighttime mountain temperatures plummeted. And there was the man at a roadside stop who pulled out five crisp $100 bills and gave them to Steenbruggen, just as they had run out of gas and money.

“Seeing parts of the country that I never would have seen otherwise,’’ Eddy said, when asked about the most rewarding part of the trip, which they dubbed their “Roll Across America.’’ “Going by chair you see so many more things than you would by car. In a chair it’s a lot slower. And the other thing is you get amazed by how nice people are in this country. So many people would stop and give us a couple of dollars or food to help us along.’’

Steenbruggen, 53, from North Reading, met Eddy at Shaughnessey-Kaplan Rehabilitation Hospital in Salem, where Eddy was a long-term patient. But as Eddy was about to be discharged, he found himself uncertain of where to go. At 20 years old and with three younger siblings, Eddy didn’t want to go to his mother’s house, where he might be a burden. He tried living on his own for a while, but that didn’t work out. His level of disability required a house that was customized to him. So, Steenbruggen stepped in, buying a two-family home in Lynn and renovating the first floor for Eddy’s needs.

But the economic tsunami that hit the country caught Eddy and Steenbruggen in its wake, with the bank foreclosing on the mortgage. So the pair, along with Steenbruggen’s daughter, Danielle, another friend, and Eddy’s two Boston terriers, Maia and Daisy, headed west, hoping to raise awareness about the daily trials of disabled people.

“The last trip was planned in two weeks because Matt was about to be evicted and I didn’t want any problems with any kind of authorities saying that he was homeless and they would decide what would be appropriate for him,’’ said Steenbruggen, who quit his job to make the trip. He was later rehired by the hospital. “I am not a blood relative and have no legal control over him and I didn’t want any problems. The last trip was more of a disability awareness trip with some fund-raising just to get us across the country. We raised about $3,000.’’

When he returned, Eddy was able to move back into the same house with help from the Lynn Housing Authority and another nonprofit agency.

For this trip, Eddy and Steenbruggen, who will likely have to quit his job again, are looking for sponsors, particularly corporate sponsors, and an RV accessible to Eddy. Sleeping in a tent during the last trip, it took Steenbruggen about two hours in the morning and another two hours in the evening to break down and set up Eddy’s equipment - the ventilator, a suction machine, a humidifier, “a mini ICU,’’ Steenbruggen said. The RV would save them time and allow Eddy a more comfortable and safe place to sleep.

“That was one of the things that was tough, finding a campground with electricity,’’ Eddy said. “And a lot of them are RV-only. So we had to hope they would allow us to set up a tent. But there was one RV place in California that wouldn’t allow us to set up a tent because they said if the rattlesnakes don’t get you, the scorpions will, and if the scorpions don’t get you, the tarantulas will, and if they don’t get you, the coyotes will. So we kept looking.’’

Eddy has so far beaten the brutal odds of his disease. According to the Muscular Dystrophy Association’s website, “DMD eventually affects all voluntary muscles, and the heart and breathing muscles. Survival is rare beyond the early 30s.’’

Most of Eddy’s friends and classmates with DMD from his time as a student at the Massachusetts Hospital School in Canton died in their teens.

Now, he just wants to keep on rolling as long and as far as he can. These trips are his way of thumbing his nose at his disease.

“I’m just trying to show people that no matter how bad you have it, you can still do something positive,’’ he said.

To increase awareness of his trip, Eddy has received permission from the Guinness Book of World Records to create a new category. When he completes this trip and documents his journey, he will have the time record for “trans USA by wheelchair.’’

The previous coast-to-coast trip was daunting. His wheelchair could travel 40 miles a day at the most, 15 in the Rocky Mountains. The group took midday breaks to recharge the chair’s battery. At times they were unsure of their accommodations for the night, appealing to local people and churches for the use of their yards, occasionally setting up in parking lots.

This time Eddy knows he can make the trip. It’s the fund-raising he’s unsure of.

To make a donation to the Journey of a Million smiles or to Matt’s Place, go to www.officialmattsplace.org.